End of life care: Preferences of patients with advanced urologic and dermatologic malignancies.
Authors: Hendrik Heers, Martin Gschnell, Severin Schrade, Fabian Urhahn, Anna Pedrosa Carrasco, Astrid Morin, Johannes Huber, Luka Flegar, Christian Volberg
Journal: Journal of Clinical Oncology (2023)

e24006 Background: Patients with advanced malignancies often have specific thoughts about their final phase of life. When asked, most people want to die at home. The reality is that most die in hospitals or care facilities and that many patients take no precautions in terms of a living will or health care proxy. One of the reasons for this may be that it is still considered taboo to talk about dying and patients do not discuss their wishes for the last phase of life with their relatives and treating physicians. Early end-of-life care conversations may have benefits for cancer patients. The aim of this study was to elucidate the thoughts of cancer patients toward their end of life as well as whether they communicated their wishes and took precautions. Methods: We conducted an exploratory survey among patients with advanced urologic and dermatologic malignancies at a German tertiary referral center. A 31-item questionnaire was completed by patients during their clinic appointment. Inclusion criteria were metastatic or irresectable prostate cancer, urothelial carcinoma, or renal cell carcinoma under palliative systemic therapy, as well as locally advanced or metastatic melanoma, cutaneous squamous cell carcinoma, or Merkel cell carcinoma under therapy. Results: In total, 238 patients (161 male, 77 female; 150 dermatologic and 88 urologic patients) completed the questionnaire. Symptoms were reported by 74% and 10% even described 5 or more symptoms (predominantly pain, sleep disturbances, anxiety, constipation/diarrhea). The majority (90%) stated that they had thought about their preferred place of death but 58% did not inform anyone about it. Overall, 74% wanted to die at home. However, this figure was significantly lower with a shift towards hospice as the preferred place of death among patients with a high symptom burden (p &lt; 0.001; [2.88-50.51] OR: 12.02) and those living alone (p = 0.01; [0.12-0.81] OR: 0.31). 61% had established a living will and/or a health care proxy. Whereas 2 out of 3 patients at least sometimes thought and talked about their end of life, 85% had not talked with their Oncologist about care options if their health deteriorated. More than half of those, however, were interested or at least open to having a conversation about it. Conclusions: Our data show that 9 out of 10 patients reflected on their preferred place of death, but only few actually talked about it to someone. While most patients had thoughts and family conversations about the final phase of life, only a minority had addressed this with their physicians. Thus, early care planning discussions should actively be offered by physicians and healthcare staff in order to overcome cultural and psychological barriers so that the wishes of patients in an incurable situation can be expressed and respected. This could help to initiate early palliative care, reduce symptom burden, improve quality of life, and prevent overtreatment of patients in the last phase of life.